simon denegri's lay review

David Willetts

Last week news broke that the Royal Institution (RI) is looking for buyers for its hallowed Albermarle Street headquarters in London as part of a plan to ease its financial woes. These amount to £7million owed to creditors according to various reports.

There’s plenty of coverage of the affair in the UK media and a campaign is up and running – lead by various science luminaries – to keep the building from falling into the wrong hands (my words). But I thought I’d share this piece from Australia just to prove the fact that people care about these things well beyond our own shores. And so they should.

However, I confess to feeling in two minds about it. I remember visiting the RI shortly after its infamous refit and feeling distinctly underwhelmed by it. The building’s public thoroughfares seemed to have been turned into a rather low-budget hotel with lots of hard plastic, eating spaces more suited to a Burger King, and over-priced food. It all smacked of mission drift.

Yet two other visits shortly after this reassured me that it hadn’t completely lost the plot – the first a debate with the Science Minister, David Willetts, during the spending review. And then, with my children, to one of their Saturday morning hands-on science fairs – great fun! They loved it. And the staff were brilliant. There is no doubt that the RI is at its best when bringing people together.

In my opinion, the RI’s past experience is a telling reminder if ever we needed one that institutions can all too easily become over-obsessed with rather costly and grandiose statements of their value and worth. To the detriment of a more considered plan for how they use their privileged position and space to cultivate national interest and debate which reflects how society has changed and is changing around them. A world that is less and less about bricks and mortar that’s for sure.

I would put the Royal Society’s Chicheley Hall in the same camp I am afraid. It was acquired with great fanfare during its 2010 celebrations yet I still can’t quite see the connection between its acquisition and serving the public interest. Maybe that’s just a failing on my part. All I would say is that there are many of us who lead research-focused organisations who are quite happy to hire rooms at NCVO or the King’s Fund with no detriment to the events or debates we have there as far as I can tell, and at a far lower cost.

I’m all for a fundraising drive to save Albermarle St as long as the deeper questions about its future mission are also addressed. For me The ‘R’ in its name should stand for ‘Relevance’ as much as ‘Royal’ and certainly not for a sense of misplaced ‘Romanticism’ or, worse still, protecting its ‘Real-Estate.’

This is an extract from a talk I gave on Monday to the Faculty of Medical Sciences at the University of Newcastle. I tried to answer the following question:

The life sciences are seen as fundamental to the nation’s health and to economic growth. But what is the public’s role in making this happen?

The alternative title is ‘Not just bums on seats’ for reasons that will become clear. I should add that, prior to my lecture, I had the opportunity to discuss the Faculty’s public engagement strategy with senior staff and colleagues and would like to thank them for their warm welcome and hospitality throughout the day.

Introduction

Over the next hour I’d like to explore with you why I believe a partnership between the life sciences and the public is fundamental to the former’s success in meetings its aims to improve the nation’s health and wealth; that our efforts as partners and as part of the growth agenda, must be conceived of as a joint enterprise.

I shall also argue that the life sciences needs to understand the distinct partnership roles that the public can and wants to play: as funder and advocate, participant, citizen, co-producer and trustee, before we can make the most of the opportunities that lie ahead. Only when we support these roles so that they are mutually reinforcing will we make the most of the opportunities ahead. Indeed, I would argue that the most successful science organisations will be those that understand and reflect this in their strategies and plans.

The public as fellow advocates

Why does this partnership matter, and why should it matter now more than ever? Well, let’s turn first to the role of the public as funder or donor, and as advocate.

As you may know, word is beginning to spread across Whitehall and Westminster if not wider, that the next public spending review is likely to take place a year earlier than expected. Also that, if the last spending review was felt to be uncomfortable, then the one about to land upon us is going to be even more so, with science facing a sterner test of its resolve.

The life sciences fared comparatively well to other sectors of the economy in the 2010 spending review. That was not just because of the level of funding but also because of the continuity of approach in terms of policy and direction with what had happened under the previous Government. This political commitment to life sciences has been sustained in the months since. Only last week the Science Minister, David Willetts, said in a guest blog for Cancer Research UK:

‘The life sciences are at the heart of this Government’s plans for sustainable economic recovery.’

In December last year we saw the publication of the Government’s life sciences strategy with its ambition of making the UK ‘a global hub for the life sciences’ by supporting a collaborative ecosystem, reducing regulation and driving innovation through ‘clusters’ and ‘catapults.’

A good part of that strategy – and what has happened since – has been devoted to enabling more research to happen in the NHS through: regulatory change – including the setting-up of the new Health Research Authority (HRA); enabling better access to patient data for research purposes; strengthening the rights of patients to taking part in clinical trials as part of their choices around care and treatment and as a right under the NHS Constitution; and establishing a new statutory duty on all parts of the new NHS to ‘promote research’ during the passage of the Health and Social Care Act.

None of this, of course, means that science generally will not face the same questions about impact, value, return on investment, the difference it has made to people’s lives, that it was challenged with last time.

In fact, one of the problems we will face is that the stories and evidence used last time will have likely devalued as a currency with HM Treasury and others simply because they will have heard them all before. A premium will be put on new evidence but also, perhaps, on similar evidence being presented with a next instalment that is compelling in ways which will persuade its listeners that they should support the authors to write another chapter of, better still, a new edition.

It is also going to take more than the vivacity of a ‘sectional’ ‘Science is Vital’ campaign or a science-only platform in the shape of the excellent ‘Geek Manifesto’ by Mark Henderson to win the argument. Science must better connect with the wider public if it is to make its existence and better still, its strengthening, of political expediency.

But at least we start in a potentially strong place on this too in respect of health research, in the shape and form of our medical research charity sector. Medical charities – as represented by the 125 strong membership of the Association of Medical Research Charities (AMRC) – collectively raise and fund over £1 billion of research in the UK every year. That figure is double what it was just over six years ago. Charities now represent over one third of all publicly-funded expenditure of research here in the United Kingdom, a situation that is unparalleled anywhere else in the world.

Given that the majority of these funds are raised from the British public – about £2,500 a minute by my calculation – charity is an important symbol of the public’s interest in research. Medical research is the leading charitable cause to which people give (in spite of a recession) in the UK – only the Netherlands has a higher percentage of its population raising money for research. And all the evidence suggests that the public see a donation to research as being of immense in making a difference, and stands as a good counterpoint to the argument that the public are semi-detached from research as an activity.

The other deliberate reason for pausing on charities for a moment is to ask you to consider one other important feature of their rise. The growth in charities as research funders has gone hand-in-hand with an increasing assertiveness on key issues in science – from hybrid embryo research to the Health and Social Care Act. It has been driven very much by those charities which are in turn propelled by a strong and active patient group or patient constituency by their side, knowledgeable not just about their condition or that of a loved-one but also about the research that is important to it.

And yet, for all this, it would be wrong for science to see medical research charities as a surrogate for true engagement with the public. Or believe, as I fear it sometimes does, that money donated is symbolic of an open-ended commitment to it by the public. Or as an illustration, case study or human interest story to be manipulated to make its case. The challenge is for science to make its own connections with the public as a fellow advocate.

That is no mean feat. For science will need to shift its philosophy from seeing the public as a crowd that needs to be educated, to a potential source of support that is to be carried with it. A friend of mine who used to produce rock festivals recently told me that the first act in the field to be used as a venue is to arrive and wait for the BT person to arrive and put in a phone line. The rest all stems from this. I sometimes look at what we do in science communication and what is passed off as engagement and wonder if we have only just got past that first act, with the phone line in place but with only the occasional incoming call being accepted.

The public as participants

Now that I’ve got that general point off my chest I wanted to turn to the part that I believe the public can and want to play in making health research an engine for wellbeing and growth. For I hope the most important reason for developing our partnership lies not with the need to make a political point, but more in the belief that we can achieve greater things to improve people’s lives if we work together.

The Prime Minister’s Life Sciences Strategy statement is as good a starting point as any for this part of the discussion because of the desire he expressed that every patient should see themselves as a research patient – as demonstrated by their willingness to share data with researchers and ultimately in taking part in trials: the ultimate goal being for the UK to remain a leading centre for clinical research in the world.

My role as NIHR National Director stems from a recognition within NIHR that, having established a world-class infrastructure for research – the supply side, we must now pay more heed to the ‘demand-side,’ that is creating more ‘pull-through’ of patients into research – including, but certainly not exclusively, clinical trials.

Generating this public demand for taking part in research will mean giving better information and tools to patients to find out about, and ask their doctors, about research such as the UK Clinical Trials Gateway (UKCTG). It also means better information and tools for clinicians. But, most of all, it will require an NHS system more set-up to meet this expectation than has hitherto been the case. Last month, on International Clinical Trials Day, NIHR CRN CC published a survey showing that:

Only 21 per cent of people surveyed were aware that carrying out research is a key activity for the NHS, yet…

82 per cent of people surveyed said it is important for the NHS to offer opportunities to take part in healthcare research and…

Less than seven per cent of people surveyed said they would never take part in a clinical research study.

The public appetite to take part in research would clearly seem to be there. Yet the picture is very patchy indeed when it comes to NHS Trusts that are geared-up – as one NHS Trust aspires – to offer every patient who walks through their door, the chance to take part in an appropriate clinical trial. The new NHS presents both challenges and opportunities to change this and the focus of our attention must be on the ecosystem that exists around a Trust. That is why initiatives such as VoiceNorth and the local collaborations it can build are going to become more and more important in the coming months and years.

But we will miss many opportunities if we take a ‘bums on seats’ approach to this agenda and define public participation only by the number of people who take part in trials. Clinical trials can only be a high visibility cloak for the participation agenda. They do not in themselves tell us much about the degree to which we have created a research-active population.

Citizens, citizens, remember we are citizens

Just last week I was talking to some colleagues about the degree to which research participants are kept at arms-length in many cohort studies, studies which often ask their public to sign-up for life so as to generate new data and learning to improve health. The reasons for this are many and some are well-founded, but not without solution.

The opportunity missed is that of learning from people how these studies might evolve, adapt and share over time in keeping with people’s lives and needs. The risk is that, before too long, people who see themselves as consumers with rights in every other aspect of their life will begin to feel somewhat used and abused, word will get round and researchers will metaphorically see doors closing as they turn into the street. The same is true in clinical trials where many patients find a frustrating lack of attention paid to basic ‘rights’ such as the right to receive feedback on the results of a trial and what it means.

In this, as with all research, we need to begin to see people not purely as participants but as citizens, members of a community who have rights as well as responsibilities in the name of pursuing new knowledge. Indeed, citizenship is how we should frame the relationship between researcher and patient. Citizens, citizens, remember we – both you and I – are citizens.

The public as co-producer

The other role that the public can play in making life sciences a driver of economic growth and the nation’s health and well-being is as co-producer.

We now have a growing body of evidence – the starting point for which is encapsulated in the 2010 NIHR/INVOLVE report ‘Exploring Impact: Public involvement in NHS, public health and social care research’- that involving the public can help strengthen research design, shape research strategy and agendas, execute the research efficiently and disseminate its findings to a wider audience.

Whether it is the prostate cancer trial that was saved from failure once patients were involved in the way the trial was articulated to potential participants. Or the James Lind Alliance Priority Setting Priority Setting Partnerships approach that is now embedded in NIHR and brings together patients, researchers and clinicians to identify priorities for research. In fact in many other countries the UK is considered so good at this stuff that they think it is the land of milk and honey – to quote a colleague of mine.

But in spite of the many successes that we – INVOLVE and its partners – have to our name, we also face significant challenges. In fact the task ahead is best encapsulated with two pieces of evidence. The first is a paper published in 2009 by Rosemary Barber and colleagues – Rosemary is a member of INVOLVE – based on a survey of almost 1,000 health researchers. It showed that less than one fifth had involved the public in their work and that many of those surveyed were deeply apprehensive about public involvement on a number of scores.

The second piece of evidence is from a report that INVOLVE published with the National Research Ethics Service (NRES) at the end of last year. This examined the extent to which public involvement featured in research grant applications coming before ethics committees. It then looked at the funder of each of these.

In shorthand the report shows that just less than 1/5th of researchers responded with plans to involve the public, 43% of researchers seemed to misunderstand what they were being asked and 38% said they had no plans for public involvement.

There is quite a lot of variation between different types of research as defined by who the funder is – NIHR funded research performing well, charity funded research applications being average considering their basis of support, and industry seemingly having no knowledge that there is a public out there at all!

An interesting post-script to the industry story is of course that, as its representative associations and others have tightened up the rules on what it can or cannot do to inform and contact patients, so it has pulled away from even the most benign public engagement activities. But that is a story for another day.

From an INVOLVE perspective, the main challenge continues to be individual and institutional attitudes if not outright resistance to public involvement. Understanding the reasons for this and determining the best way to tackle it is something you may well have views on today. The opportunity for me seems to be how we might move co-production out of the handcuffs of what happens in the traditional peer review process and its obsession with lay membership and patient representation, to using new technologies and social media to gain a wider view and insight from the public at all stages. We need to think differently and more creatively about this stuff.

The public as trustee

There does seem one final way in which the public and researchers can find mutually beneficial ground on which establish a partnership.

I know that ‘Impact’ – particularly in the context of the Research Excellence Framework (REF) – is a highly popular topic of conversation in universities. It is also very much on the public involvement agenda as well. Whereas you fire brickbats, we are still at the stage of scratching our heads to some degree. What is the evidence? How can we best demonstrate it? How do we define value? Should we bite the bullet and begin to crunch some numbers if I may mix metaphors for a moment? And I am sure we have much to learn from you and other colleagues on how best to tackle this agenda.

But given the rise of ‘Impact’ as an agenda, and the inevitability with which Government is likely to ask for evidence of the soundness of its investment in science it would appear absolutely essential for science and its public to be working together to articulate this value. And that brings me back full circle to the role of the public as fellow advocate.

And yet it is more than that. It has always seemed to me that the ideological blind-side of science when it comes to public involvement has been its failure to see it as protective air cover for the sort of political storms and difficult public debates that do come along more regularly than would we wish.

Even if people find it difficult to accept public involvement as a value-add in terms of the quality and relevance of science, then the societal trends towards ever greater scrutiny of what those who receive taxpayer and public funds do in its name, should surely point to the need to involve the public as part of good governance and accountability to instil wider public confidence.

Close and conclusion

If you were to ask me for a vision of the future it would be as follows:

– For citizen-driven research to be seen as integral to the the UK’s health research ecosystem, a way of doing research which brings many partners together including the public to derive ever-greater value out of what we all do, and where there is mutual respect and acknowledgement of respective roles and expertise.

– A health research system in which all our public funders have public involvement as a driving philosophy for the way they work.

– And an NHS in which patients are challenging their Trust and doctor to make real their right to participate in research as part of their care and treatment.

I hope today that I have given you good grounds to see the public as an important partner of the life sciences in meeting its ambitions, in also setting out the many roles the public can play to this end.

I said at the beginning that the best chance of success will come if we see these roles as mutually reinforcing and find ways to make that happen. Equally, the most successful science organisations in the future will be, I believe, those that offer diverse opportunities to the public to be a partner and allow their public to switch between these roles according to the needs of the time. My sense is that you are thinking along the same lines here at the Faculty.

It would seem we are one step closer to ‘open access scientific publishing.’ How big or small that step will be, we do not know yet.

Yesterday we saw a classic bit of Ministerial sounding out of the community on one or two emerging ideas, when the Science Minister, David Willetts, spoke to the Publishers Association . If the ideas had been very radical I suspect Government would have gone that other classic route of getting someone else to float them.

The voices of academia have so far been dominant in the reaction to the speech. So one of my reasons for posting it here is in the hope of giving it a little further reach, to encourage my colleagues in patient and public involvement to give the potential changes in scientific publishing the serious consideration they deserve. Opportunities lie with the way the wind is blowing.

Four things occurred to me when I read the speech this afternoon.

First, the Pubishers Association’s offer of putting journals into public libraries just seems a bit of a cheap trick. After all, unless I am wrong, many public libraries are closing aren’t they?

Second, I still don’t think that academia or indeed Government quite ‘get’ the web or social media. All this talk of ‘harnessing’ it reminds me of the days when PR people used to try and convince everyone that they could ‘control’ the media. Isn’t the whole point about it – the thing that makes it exciting – is that no one gets it and that the person in the street is evolving it just as much as a corporate might aspire too.

Third, I’m still not convinced that those proposing the solutions are quite living the ‘public interest’ dream in the way that they would like us to think. Most of the benefits as they see them, are articulated in terms of data-mining, further academic research etc. Although some elements such as this hold promise:

To enable greater public access to Research Council-funded research information and simplify networking between researchers and SMEs, the Councils are now investing £2 million in the development of a UK “Gateway to Research” portal. Set to open next year, the gateway will enable users to establish who has received funding and for what research. It will provide direct links to actual research outputs such as data sets and publications. They are already working to ensure information is presented in a readily reusable form, using common formats and open standards. I am delighted that Jimmy Wales of Wikipedia will be advising us on these common standards and helping to make sure that the new government-funded portal for accessing research really promotes collaboration.

Fourth, while I understand the Minister’s skittishness over ‘Trip Advisor,’ the fact is that as science begins to operate in an ‘open access’ environment it is going to have to live with this sort of scrutiny and opinion. Indeed, with the sudden explosion in what is available – not unlike the Bank of England printing more money, the need for good public engagement to help translate and interpret it, is going to be greater than ever. How we make that happen is the next big question.

Indeed, would it really be that harmful to science and society, to have Oprah or Richard and Judy picking their best research paper of the week? Or people going onto the ‘Petri Dish’ website to comment on the research that resonated with them most? Perhaps even click the ‘Like’ button.

Like this:

I was very privileged to be asked to give the Furlong Christmas Lecture a few weeks ago. I hope this doesn’t seem egotistical but here’s the text of that lecture amended with useful links etc – it touches on and rehearses themes that will be familiar to those of you who have visited the blog before. Nonetheless I hope it makes for an interesting read and perhaps sparks some thoughts of your own.

The Furlong Christmas Lecture – 2011

Good evening ladies and gentleman. May I begin by saying what a great pleasure to be with you.

I feel very honoured indeed to have been asked to give this, the fourth Furlong Christmas Lecture. Ronald Furlong left a rich legacy in research as you know. He was also quite clearly a force to be reckoned with. By all accounts, his pursuit of innovation that would improve the lives of his patients was formidable; his concern that the patient should come first, courageous. I read a comment by one of his long-standing friends that such was his size one could not see the door once he had stepped through it. I know I certainly would have wanted him on my side as a patient.

Ronald Furlong’s philosophy lives on, of course, in the work of Orthopaedic Research UK. The desire to put the patient first is self-evident in everything I have read about the charity, its work and its history and I would like to take this opportunity to congratulate it on another successful year. The fact that increasing numbers of researchers are applying for your funding is a clear signal of your credibility and growing stature in the scientific community.

Putting patients first is also the theme of my lecture tonight. But, unlike my predecessors, each of them scientific leaders in their own right who have lectured on key developments in their field and what they might mean for patients, I am going to take a different approach.

I hope to examine and explore with you how patients are actually putting research first in their lives making it part and parcel of their patient journey. Also, how we might widen public involvement and participation in research to ensure that we make the most of opportunities that will mean better outcomes for patients in the future and enhance our international standing and reputation for cutting edge research.

Perhaps I should say at this point that there is an intense, and intensely, fascinating debate about the relationship between science in general and wider society. Much as it was tempting not too, I have, however, elected to focus my thoughts primarily on medical research and clinical research in particular as it seemed most likely to resonate with you.

As Chair of INVOLVE it is also important that I explain from the outset that our definition of public involvement is of a wide spectrum of activities which extends from public engagement thru participation to, most importantly, active involvement in research decision-making.
If nothing else this evening, I hope you feel that what I am about to say is timely and topical given the Prime Minister’s speech earlier this week setting out the Coalition Government’s ambition on life sciences and their aim of enabling everyone to become a ‘research patient.’

Pioneers

Let me begin by introducing you to two people whose stories can help I think, illustrate what I mean by public involvement in research but which also encapsulates how far we have reached in the UK in terms of its achievement.

As well as doing all the things that young teenagers like to do, Georgia also helps researchers design child-friendly clinical trials and develop medicines information that children can understand. Her role has taken her to parliament as a research ambassador and, in her own words, she says: “I really enjoy my work with MCRN because what we are doing will help young people understand more about medicines, research, and improve treatments for young people in the future.”

The second person is Brin Helliwell. Brin is a school teacher who was left partially paralysed by a stroke in 2005. His pursuit of recovery and wellbeing since then has led him to participate in a number of clinical studies. Asked by researchers and fellow patients to develop a tool to encourage others to do the same, he proposed a video project which is now on the main website for the NIHR Clinical Research Co-ordinating Centre in the UK. Quite rightly, as executive producer, he takes the starring role in the first of the videos produced and now available on their website. Here he is in his own words.

The point about Georgia and Brin and indeed initiatives such as this at the University of Bristol School of Clinical Sciences, is that they are still very much pioneers in the move to see people much more involved in the decision making activities in research projects and in research organisations.

As pioneers they are leading from the front, highly self-motivated, challenging attitudes and pushing at the frontiers. My sense is that Ronald Furlong would therefore have felt a great deal of affinity, and would have been delighted to share this stand, with them. He would have also, I am sure, empathised with their sense of isolation as frontiersmen and frontierswomen and of the steely nerve that they would have required to get this far in settling new and sometimes hostile territory.

It is also the explorer’s burden to tend to have your actions considered with a mixture of awe and consternation by your fellow human beings.
For the fact is, the common perception of how patients and the public engage with and contribute to research is far removed from what Georgia, Brin and others do. It is to see the public as a force to be mobilised to raise funds for, or influence opinion in favour of, research – often motivated and led by the relevant medical research charity concerned.

Let me give you a brief example from my own experience but one I believe we can all relate to.

Mrs Sharp – not her real name – is a middle-aged women who stands outside my local Tesco Express collecting money for Alzheimer’s Research UK. As well as caring for her mother who has dementia, Mrs Sharp turns come rain or shine to fundraise with a small and rather battered collection tin. Last time I spoke to her she gave me a copy of the letter she had received from the charity thanking her for the £3,000 she had raised. And for me she has become rather symbolic of this common and traditional perception of the role of the public when it comes to research.
As you can tell I am a big fan of Mrs Sharp.

But, my issue with seeing Mrs Sharp as the be all and end all of the relationship between research and the public is not that it is wrong. Not at all. Yet it lacks a sense of ambition. Indeed by defining public activity in this way we limit our horizons as to what patients and researchers might achieve together if they see each other as part of the same community working with common cause.

Before considering this partnership further, it might be worthwhile to pause for a while and reflect on the role of medical research charities in the UK. Because they can also tell us a lot about the relationship between research and its public.

Charities and medical research

It is my view that the contribution of charities to UK medical and health research continues to be understated if not underrated. It certainly was by the Prime Minister and his Ministers this week who barely mentioned them.

Charities as represented by the 120 plus strong membership of the Association of Medical Research Charities (AMRC) collectively raise and fund approximately £1.3 billion of research in the UK every year. That figure is double what it was just over six years ago. Charities now represent over one-third of all publicly funded expenditure of research here in the United Kingdom, a situation that is unparalleled anywhere else in the world.
Given that the majority of these funds are raised from the British public – about £2,500 a minute – charities are I believe an important symbol of the public’s interest in research.

Indeed they are a good counterpoint to the argument that the public are semi-detached from research. Medical research is the leading charitable cause to which people give (in spite of a recession) in the UK. Only the Netherlands has a higher percentage of its population raising money for research. These two facts alone are helpful in building a case that not only do the public ‘get it’ but that they also ‘raise it’ by the bucket load. All the evidence is that they see a donation to research as having immense value and potentially making a highly tangible difference.

The other deliberate reason for pausing on charities for a moment is to ask you to consider one other important factor for their rise and which is relevant to the theme of my talk. The growth in charities as research funders but also their assertiveness on key debates in science – from hybrid embryo research to the current Health and Social Care Bill going through parliament – has primarily been driven by those charities which are in turn driven by a strong and active patient group or patient constituency by their side, knowledgeable not just about their condition or that of a loved-one but also about the research that is important to it.

We have evidence of a research-sympathetic culture. The real question for me therefore becomes how we turn what patients and the public currently do – which is valuable and important in its own right – into something more? Perhaps, you might ask, why should we?
Well, there are three principal reasons in my view.

Why public involvement in research matters?

The first is what I call the mission argument –and takes its calling from the assertion by Dame Sally Davies, Chief Medical Officer and Head of the NIHR, that a hallmark of a modern healthcare system is its capacity and capability to advance science knowledge and understanding, develop new treatments, therapies and intervention and incorporate these into policy and practice.

None of this endeavour can happen without the inclusion of patients and certainly not in a universal health care system where the mantra is now ‘Nothing about us without us.’ It would be a little like a high street retailer opening-up shop without taking any heed of its potential consumers nor listening to their comments and feedback or indeed looking at their own sales on a day-to-day basis. I think the last person who tried something like this was Reginald Perrin and looked what happened to him.

The second is what one might call the bottom-line argument or the ‘Charge of the Light Brigade’ argument if you prefer the Science Minister, David Willett’s analysis. As the Coalition Government expressed this week, there is an economic imperative to strengthen and improve research and innovation here in the UK; not just to drive greater efficiency in our healthcare system but also to maintain and strengthening our international standing as a leader in clinical research.

The most common evidence or statistics cited by commentators to suggest that this position is under some stress is to look at the UK’s share of clinical trials compared to other countries – down from 6% to 2% is the most oft-quoted figure. Monday’s announcement on life sciences builds on the work of the last five years builds to rectify this position with better infrastructure and greater funding. And we are most certainly moving in the right direction – more than half a million people participated in studies supported by the NIHR Clinical Research Network in 2010, a 24% increase on last year. But this effort will be for nothing unless we focus even greater attention on empowering patients to come forward to participate and become involved in clinical trials and studies.

The third reason is the ‘evidence-base.’ The fact is, there is now increasing evidence that involving the public in research can improve its design, its conduct and its outcomes. Two years ago INVOLVE together with NIHR published this document which collected together case histories of the way in which public involvement had a beneficial impact. I am going to mention one of them but start by drawing your attention to an example recently featured in The Guardian.

I am sure that a number of you have heard of the James Lind Alliance (JLA) – named after the Scottish naval surgeon James Lind who pioneered clinical trials 250 years ago. One of the key activities of JLA – funded by NIHR and the Medical Research Council (MRC) is what are termed ‘Priority-setting partnerships’ the aim of which is to identify the key research questions that matter most to patients and clinicians, that if answered, would improve the quality of patent’s lives.

In the example covered by the Guardian which took place in stroke medicine, clinicians, patients and researchers whittled down 500 possible questions to just 10 which can now be used as the basis for future work, funding and inquiry. Similar exercises have been done in asthma and prostate cancer with very promising results in directing future lines of inquiry.

Turning back to the INVOLVE publication, the example I wanted to mention is also from prostate cancer. In this instance, researchers faced real difficulties in recruitment to a prostate cancer trial so they decided to carry out some in-depth interviews with potential participants to understand why they were not coming forwards. What emerged from the interviews was that not only were researchers not explaining the research clearly enough, but that to all intents and purposes some of the terminology used was being misunderstand in ways that actively turned people off. So when researchers used the term ‘watchful waiting’ to describe the non-treatment aim of the trial, patients interpreted this as if clinicians would, I quote: watch while I die.’

Oh dear.

Changing this term to ‘actively monitoring’ and making a number of other tweaks gave patients more confidence and, as a result of some of these simple changes, recruitment rates went up from 40 to 70 per cent.

But in addition to these three reasons I believe there is another pressing argument in favour of increasing public involvement in research. For it can help us collectively manage some of the new tensions that are arising out of an increasingly exercised and democratised public. I think we must be acutely aware that in the external environment around us the public is rightly feeling more willing and more confident about challenging traditional boundaries. This growing desire to assert one’s citizenship becomes particularly passionate and more energetic when it comes to people’s own health. And research is not immune to it.

As you may be aware, Liberation therapy was ‘discovered’ by an Italian scientist called Dr Paolo Zamboni in 2008. The theory goes that by widening supposedly blocked neck veins one drains blood and iron deposits in the brain, thereby alleviating MS symptoms. It is highly controversial with many, many scientists disputing Dr Zamboni’s methods and its impact.

But the clamour from MS sufferers, their families and the national and local media in Canada for patients to have access to ‘liberation therapy’ was overwhelming. Some patients travelled abroad to the United States to get the treatment. Some of those who took this route died. From day one the Government and scientific community was very much on the back foot and seemed ill-equipped to deal with such a public controversy. However, to its credit the Government did the only thing it could in the circumstances. It set up a working group to review the latest research and make its recommendations, and concluded with a decision to proceed with a call for Phase 1 and 2 clinical trials.

Is this story a case of ‘power to the people’ usurping science and the scientific process? If the Government had caved in and had gone a different route to its decision to conduct an expert review and base its actions on this, then perhaps the answer might have been ‘yes.’ Nonetheless, it is an absorbing case study in how any Government can come under extraordinary public pressure in the field of medical research and treatment.

In considering whether what happened in Canada could happen in the UK, you might wish to note the following as factors that would mitigate if not prevent the same event. Most important of all, Canada’s record on public involvement is not good. Only very recently have they regarded it as a strategic priority. By comparison, and despite the fact that public involvement is still emergent here, our own equivalent of the Canadian Institutes, NIHR, has an established and funded programme in INVOLVE, and it has made public involvement a requirement of NIHR grant funding as well as a strategic priority for those whose lead and manage its various activities.

Also, although the controversy did indeed cross the Atlantic it only lapped rather than broke our shores. I have no doubt that a fundamental reason for this was the way that the MS Society and MS Trust – the leading charities here in the UK – managed the debate by being open and transparent. Not only were they frank in explaining their standpoint but they also used social media and social networking sites as forums where patients in favour, or those against, could debate and discuss the pros and cons.

I wrote on my blog fairly recently that this approach of seeing patients as partners in managing an issue and expectations is absolutely fundamental if science and scientists are to avoid a clamour for liberation some way down the line. It has also been significant in making the relationship with our own regulatory agencies here in the UK such as NICE are less stormy one than it might have been.

Social media

Another ‘new’ tension – which I have already referred to in passing – is the challenge arising out of people’s use of social media and technology to set their own agenda in research.

This is much more developed in the United States and some of you may have heard of this site called ‘PatientsLikeMe’ which thousands of patients are now joining to share knowledge and experiences of their respective conditions. Researchers and pharmaceutical countries are increasingly keen to tap into it as a mine of data as you can imagine. And PatientsLikeMe have already formed a number of partnerships with research organisations can engage with its users as a ready pool of participants in research.

In the United Kingdom we have only seen a slight stirring of such activity, with the most developed examples occurring where there is quite a cohesive and organised patient grop.. But I myself been approached by several other individuals already this year about setting up similar, more generic sites and I have no doubt that this trend will accelerate.

Whether you see this as patients taking the law into their own hands or trying to make sense of their experience for the wider good depends on your standpoint. As you’d expect, my perspective is that this is a natural occurrence borne out of the latter and which, if harnessed, could be enormously powerful.

Unfortunately, and rather unfathomably, our systems and institutions here in the UK seem unable to grapple with the enormity of it. I wonder whether the root cause of this is the considerable cultural difference that exists between researchers who view social media in a very utilitarian sense (as another information provider), or the doctor who understandably worries about patient confidentiality, and the many members of the general public who increasingly see it as a way of life and are comfortable with forming networks and sharing information with friends and strangers.

Did you know, for instance, that the average mobile phone user is never more than three feet from their phone? – That’s a comforting three feet nearer than a rat if you live in London. Or that 1 in 3 people say that they could not live without the internet.
We need to, get with the programme, as they say.

Overcoming the barriers to public involvement

So, thus far this evening, I have talked about the current state of play in public involvement, the role played by charities and the opportunity their engagement with the public represents, the reasons why public involvement is important in our future endeavours in research, and some of the new tensions in health arising out of a democratized public where public involvement is and will be invaluable.

In this last portion of my talk I’d like to touch upon how we can overcome the barriers that stand in our way to public involvement and to patients seeing research as part and parcel of their patient journey. I’d also like to address that notion of the ‘research patient’ as David Cameron put it.

The most difficult barrier to overcome in my view is in terms of the knowledge, understanding and acceptance of public involvement among researchers. And, in my opinion, it is often the funders and the institution and their leadership which has the biggest role to play in shaping their viewpoint.

Even more telling was the variation in these statistics between those researchers being funded by NIHR (who were the most well-versed and responsive), charities (where researchers did not perform as well as one might expect), and industry where knowledge, understanding and reference to public involvement was negligible. So, to go back to my opening point about institutions and funders, as with NIHR I think that all funders should be requiring researchers to respond with details of how they will involve the public and also making a lay abstract of the proposal mandatory – both at the time of grant application and research publication.

The second barrier or collection of barriers to overcome, reside in our health system itself. When I talk to patients they talk about wanting the NHS to be a ‘National Health and Research Service’ where the research activity of the hospital or clinic is clear from the moment you walk through its doors, where you don’t have to pay privately to go on a clinical trial, where discussions about participating in a clinical trial can be easily and readily had with one’s GP. It is just not happening at the moment. And sometimes it has as much to do with professional attitudes as the systems and regulations themselves.

General Practitioners on the other hand proved highly resistant to having conversations with patients about such matters or indeed talking with patients about clinical trials they could be eligible for. If pressed, they seemed to take up an ever more paternalistic and obstructive attitude towards their patients and medical records.

That leaflet is now out in 6,000 surgeries and it will be interesting what comes back from the evaluation of it with patients and GPs in a few months time.

So systems and professional attitudes…and while on the one hand I am optimistic that the changes being made to the Health and Social Care Bill will benefit research by removing some of these barriers, these are only the end of the beginning in changing the embedded culture within the NHS which has historically not been hostile but not supportive either of the research enterprise in their midst.

The last barrier lies in patients themselves. Much of our focus in the UK on improving the environment for research has been on making the system work better as I say – what I like to call the supply side. Far less attention has been paid to the ‘demand’ side of things, how we equip and encourage patients to come forward more actively, to see research as fundamental to the role it plays in the delivery of their own treatment but that of others in the future, and their role in it.

Perhaps research should be taught as the fourth ‘R’ in our schools, or we should write to everyone on their 18th birthday like political parties do, explaining the compact they are entering into with the NHS including what it does in research as an independent adult, or indeed, simply rebrand the NHS as the ‘National Health and Research Service’ as some have suggested.

Ladies and gentlemen, we have some great things on our side in the UK for promoting and advancing medical and health research:
A strong Government champion in the NIHR
A thriving medical research charity sector connecting with the public
A modern and universal health care system
and
A cohort of research leaders following in the footsteps of Ronald Furlong.

I hope tonight that I have also given you some insight into the unique and inspiring evolution of public involvement in the UK including some of its pioneers. Above all, that it has reassured you that its promotion and advancement will not lead to:
Dodge City
Or even a city built on a seismic fault
But a settlement where research is a way of life for all its inhabitants.
Thank you.

The Science Minister, David Willetts, blogs in today’s Guardian about the challenges for science writing in a world increasingly dominated by online media .

He richly articulates the terms of an interesting debate and seems to convey genuine interest in the subject and a sincere wish to hear views.

We must give the Online Media Group for Science initiative the chance it deserves not least because those who are members have respected voices in this sphere.

But three things.

First, there is much out there already which is energising and captivating which could simply be trawler rather than submitted – online and social media entries to AMRC’s excellent science communication awards for instance.

Second, it is a shame that having identified key aspects of the debate we are asked to channel our efforts into one specific component – namely outputs. As Willetts says himself there is so much more to the questions in this area than how we push information out.

Third and last, while money is tight, it seems a shame that participation in such initiatives can not be incentivised in some way. For a few dollars more….

A major speech by Science Minister, David Willetts, about science and not a word about ‘Science and Society’ or the importance of the public.

I am pleased that the Minister recognises the importance of ensuring science articles are in the public domain and not behind a pay wall but it’s curious there seems no public involvement in the inquiry being led by Dame Janet Finch.

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Welcome back to those of you who left the rest of us to run the country for two weeks.

I must say that I spent the Bank Holiday weekend in a verily good mood having had a quick peek at the results of our annual member survey. This showed that 98% of our members say we meet their needs and 93% rated our services as good or very good. With results like that I imagine there will be pressure to call in the UN inspectors next time. But given that I am on to pastures new shortly, it’s nice to know I haven’t wreaked havoc and destruction on this fine Association over the last five years.

As my team will tell you, sad person that I am, I live and breathe surveys. I even survey my children regularly on what they want to do/eat/watch/visit etc so bad has it got. But there is one survey that I have been eagerly awaiting for, for some weeks…

The 2011IPSOS Mori Public Attitudes to Science Survey pubished today makes for fascinating reading. In fact I think it is one of those pieces of work that merits much deeper study and analyses over the coming months. Naturally, the PR around it has concentrated on the good news aspects – that 86% of people are amazed by the achievements of science. But, fair game, there has also been a lot in the coverage which has noted the public engagement concerns that come through. The Department for Business, Innovation and Skills news release is here for good measure.

You’ll see that the Science Minister, David Willetts, has responded to this latter challenge – and it is a challenge – by re-iterating his commitment to public engagement. The news release goes on to refer to a number of ongoing programmes which are being funded by the Government. But c’mon David, you can do better than that. These surveys should be the basis if not the prompt for some strategic thinking by the Government. Perhaps it could even be a good first topic for the recomposed Council for Science and Technology (CST) when it next meets. Anyway, the point is, this is news we should use.

In that vein, I noticed a few nuggets of interest that are worthy of further consideration by my own sector:

That only 17% identified charities – or even universities for that matter – as funders of research…is a little disappointing. But the fact that no respondents saw the NHS as a funder of research is simply worrying. However, it doesn’t explain whether they see research as an important activity of the NHS which is a different sort of question.

I was struck by the huge amount of data and discussion about public perceptions around science regulation. That 88% of people feel regulators should communicate and engage with the public sends a strong message to whoever is going to lead the new Health Research Agency (HRA). It also debunks some of the things I have said previouly that a new HRA shouldn’t go OTT on public engagement.

The low understanding of stem cell research and clinical trials suggests we have much more to do to underline the importance of both to indivuals, as well as to the the country’s overall wealth and health.

That people tend to trust scientists funded by universities (83%) and the charities (76%) most is something that I suppose those of us in these sectors can feel pleased about. But lower response rates for the private sector will not serve us well in the long-term. We all need to communicate the important role these valued partners play.

Inevitably the reactions to the survey so far have pinpointed the ‘engagement gap’ that exists between the 66% of people who say scientists should consult the public more, and the more than half who say they are not interested in being involved. But, and this is where can surveys frustrate more than they illuminate, it would be helpful to know what might spark their involvement.

The latter point is the perennial concern for those interested in public engagement. How we choose to interpret it is critical. The detractors of public engagement often point to it as the reason for less effort. I see it as the reason for more. Engagement is often about ensuring that people have ‘access and opportunity,’ it is rarely about marshalling people just to get some satisfying numbers about attendance at the end. Indeed, if interpreted in the latter way, I think we ultimately set ourselves up for failure.

What this survey tells us is that, while we might rejoice in some of its conclusions, we need to think more deeply and work much harder at making science meaningful to, and inclusive of, its many publics.

Monday saw the Science Mnister, David Willetts, and Health Minister, Earl Howe, announce what are being called therapeutic capability clusters (research consortia) at the ABPI/BIA conference in London. PharmaLetter has an article on it and what I think is the formal news release can be found on Pharma Live.

Don’t be fooled by the PR speak which makes it sound as though this entity has just been launched. As the MRC comment implies, work on getting this thing off the ground has been going on for months – well before the General Election. But going public is significant in the sense it means that the potential hurdles standing in the way of its feasibility – like pharmaceutical companies sharing their data – have been overcome.

It’s unfortunate – he says in a rather grumpy way – that no one seems to have mentioned the involvement of some leading charity funders up to this point such as Arthritis Research UK. In actual fact it is worth pointing out that the Office for Strategic Co-ordination of Health Research (OSCHR) has been very pro-active in engaging releveant charities in the two therapeutic areas concerned – inflammatory and immune diseases.

On the back of the spending review I would also say that yesterday’s news is quite an important political vote of support for OSCHR and it’s role in engineering partnership working for clinical research. In the run-up to 20th October there were some whispers that OSCHR might change/migrate/vanish etc etc. But this very tangible initiative and the up-front way in which it is being badged with OSCHR’s name by Ministers indicates that its place in the world is much more scure.

I can only think of turning the last few hours of trying to absorb today’s announcements and figures in the following way:

The good

Surely even the harshest critic would have to acknowledge that, comparatively speaking, science fared well in today’s spending review. It was certainly spared the savage cuts that we are seeing elsewhere and that were long muted.

The fact that the basic components of the funding regime remain intact means continuity and stability – qualities often overlooked or indeed deliberately attacked in politics but crucial to productivity.

The ring-fencing of the science budget, not just because of the protection that it affords, but because it helps to ensure transparency and scrutiny of the science budget.

The fact that the government has listened and an important argument about the role of science in the economy and society was won with HM Treasury – it by no means seemed that way just a few weeks ago.

The commitment to the Medical Research Council (MRC) and maintaining its budget ‘in real terms’ and also to big ticket items like UKCMRI.

The strong narrative in support of clinical research generally.

The coalescence of many voices in science behind a common aim…as necessary in good times as well as bad

The not so good

A 10 % cut in real terms will still be painful. Even with the sort of efficiency measures recommended by the Wakeham report some surgery is going to be required somewhere.

What this means in terms of our international competitivenes.

..but, as said, it could have been far worse.

The uncertain

The first is the pernennial worry for charities about the settlement for the Charity Research Support Fund (CRSF) under the QR settlement which has yet to be hammered out. It is a key lever for our involvement and underpins our partnership with universities. So, plenty of negotiations to be had yet.

The second is that charities will undoubtedly come under pressure to fund more research at a time of less resource. Competition will be fierce. This will come with its own associated stresses as we tried to point out in our letter to The Times last week.

With less news forthcoming about other research councils some have already intimated the need to ensure what happens here does not undermine interdisciplinary research and partnership.

….and the great unknown is the extent to which the Browne report recommendations re: tuition and teaching will have a knock-on impact on science and future generations of scientists.

What happens next?

I think the coalesced lobby needs to push on now. The near-term objective must be to make sure the forthcoming growth white paper translates today’s statement of intent by the Coalition Government into a cohesive plan.

In flying one is taught how to use the circle of uncertainty principle when lost: find a fixed landmark and circle until one can identify where one is by reference to your map.

The run-up to today has felt a little like that. We have had a fixed landmark in the CSR. Now, at least, we know how much fuel we have on board (even if it is not as much as we would like). And it looks likely there is a place to land. Doing so safely and in one piece is the next and perhaps hardest part to deliver.

Well, we won’t have too long to wait to know whether this is true but the Guardian is reporting this evening that science spending is to be frozen in tomorrow’s CSR for a review period, representing a 10% reduction in real terms over that time as inflation reduces the spending power of departments.

…and further perspective from the Financial Times running along the same lines as well as more on BBC News including some more specific remarks about the Medical Research Council. Plus The Times (paywall). Interesting narrative in the latter piece from Treasury sources which suggest the growth arguments of the science lobby have been effective.

I feel I must dedicate this blog to the gentleman who posted an online comment in response to my letter in The Times yesterday, saying it caused him ‘metaphor indigestion.’ I could almost hear the indefatigable voice of my English teacher, the late Brian Mitchell, behind every word.*

So….like the Red Arrows at one of their seaside displays in summer, science and the Government broke formation last week and hurtled towards eachother in a low pass over the crowded beach of onlookers. It was not quite a collision but it caused enough downdraft to make us all lose balance. For a moment only one hopes.

In terms of the ongoing debate, Brian Cox is interviewed by The Sun today (I never thought I’d link to that paper), rumours continue to abound and some have drawn a distinction between the cyber-activisim it has spurred and the more sedate approach of others. It was ever thus with campaigns. The most important thing must be that this doesn’t disintegrate into a fight among ourselves rather than a debate with government. I know my members’ energies are focused on how to encourage Ministers to be brave enough to believe that science can help them achieve a barrell roll through the recession and recover in a steep climb upwards.

At some point we all need to be flying in formation again. Pigs might fly, I hear you say, but I have very good evidence that pink t-shirts can.

Strange and as incredible as it may seem I wish that I was in Birmingham this week. To attend the British Science Festival of course which started today. Unfortunately their website feels a bit ‘static’ and the conference blog is non too prolific as yet but it is early days I suppose. My hot tip for festival organisers is stick to one site through the years but what do I know….I would still like to go to Birmingham.

Anyway, some of you may have seen that BBC Online have been running the following piece about Lord Sainsbury’s speech there today. In essence he has called on scientists to enter into a more public debate about science. He also refutes the usual knee-jerk accusations that the public don’t understand risk and need to ‘be ‘educated’ or made ‘scientifically literate’ (I’d rather prioritise ensuring people have basic standards of literacy and numeracy first if I was honest as I’m sure my Times critic would).

Suffice to say that Lord Sainsbury has made me feel better about my comment at a David Willetts roundtable last month on the need for the UK to be more radical and strategic in our approach to public engagement on science. For example, this from China. My sense from the aforementioned meeting is that the Minister would like to return to the subject in due course so I hope some good ideas come out of Birmingham while at the same time not forgetting the job is simple at heart – it is about separating fact from fiction as my colleagues who dealt with the Vitamin B story last week will tell you.

And finally, just to mention that tomorrow or Thursday we will be publishing our submission to the Academy of Medical Sciences inquiry into the pros and cons of a single regulator for research as well as announcing 3 new member charities. It’s enough to cause you indigestion just in anticipation isn’t it.

In the meantime, I’m off to join my 121..sorry 124…members flying in formation.

AMRC member charities fly off to see the Minister

*Apparently it’s the thing to do name your favourite teacher at school as though other people should know them. A little like going on holiday to America and everyone asking if you know Mr/s x.

Global warming was not high on the Victorians’ agenda as anyone who attends a summer event in parliament will attest. But the heat is usually a good sign that your event is packed and the conversation flowing. So it was with yesterday’s excellent All-Party Parliamentary Group on Medical Research summer reception.

The show of strength at the event – which brought together medical research charities, funders, the university sector, other science organisations, MPs and Peers including two Ministers (David Willetts and Lord Howe) – felt well-timed given the summer recess in a few days time and the hard negotiations over the Comprehensive Spending Review (CSR) in a time of economic drought.

I was especially delighted that the research showcased in the room and accompanying event programme had clearly struck a chord with the Science Minister, David Willetts. In his speech he highlighted that this was just the sort of evidence the Government was looking for and that he was minded to send a copy to HM Treasury. They, and you, can find it here! And shortly we will post photos from the event on AMRC’s website.

It seems as if the world is besotted right now with the gathering of evidence about research and its economic and social return; the Department for Business, Innovation and Skills (BIS) is imploring the community for economic analyses, examples, case studies and vignettes. And it seems the same is true for other sectors in contact with other Departments. Out of such trends, industries are created.

In this hive of activity, not a few of my colleagues have wondered aloud: ‘What are all those economists in the Treasury and across Government doing if they are so dependent on us for the data?’ A good question. Answers on a postcard please, or better still there is perhaps a lightbulb joke in the making.

Although we will learn the results of this exercise on 20th October it does all feel a little Kafkaesque. Who knows, in twenty years time we may well find ourselves opening a locked door marked ‘Science Settlement 2010′ leading to an underground vault in HM Treasury. It will reveal masses of CSR submissions along one wall, copious evidence of impact (some of it undisturbed) against another, and a few untidy, intriguing but essentially meaningless civil service notes on a low-down shelf against the third. But we wouldn’t really be any the wiser for the revelations.